“We’re just not sure what’s wrong with him.” Another so-called expert tells me Taylor has “non-specific developmental delays”; or PDDNOS. Yet another doctor says I am not properly bonding with my son and thus I am at the cause of his tactile defensiveness and emotional distress; a polite way of saying I am a refrigerator mother. He puts this in writing and I believe him.

Defensively, I retreat. I cannot bear another heartache. I fear my son will leave me and die like Chuck did. Losing my husband when I was 25 was a big blow, thus making the decision to become a single mother to “learn to love again” seems like a good idea.

As I live each day with my husband’s memory, I withdraw from Taylor ever so slightly. I am trying to do the right thing, but I live in fear. I have not yet adjusted to this life of uncertainty. This is not what I signed on for.

I love my child, but I do not feel the overwhelming joy of motherhood that other mothers coo about. Instead, in this my baby’s first year of life, with all the complications and uncertainty of exactly what is wrong, I feel fear, shame, terror, and anxiety as daily staples. I hug denial – quietly – silently. I am not aware that I am blind to my reality and have little if any faith. I just pretend to be strong, but I am deceiving myself. I tell myself “He’ll grow out of it. He’ll be okay.”
And then, in a single moment, I change forever. I am suspended above the examining room. I watch myself from above – as if in slow motion. I cannot believe the words I hear…” We just can’t say if he’ll ever walk or talk.” A new take, from yet a new doctor, about my son. I crash and burn all at once.

I hear the sharp sound of the white paper crinkling on the table, as Taylor wiggles about… “We just can’t say… “ These words reverb in my mind.

I am instantly sobered. I wake up to the reality that my child might never be so-called “normal”. I get it, loud and clear. I can no longer love Taylor from a distance. Denial is no longer an option. I must find a way to come to terms with his disability which until now I could only deny. And then, the miracle comes. It seems to happen in an instant.

I see with defined clarity that out of fear of losing my child, I’ve begun to give up on him. It is clear I must make a life altering choice to accept my child, or to continue to emotionally abandon him. And then, as if with the flick of a switch, in a newfound awareness, all fear and silent, quiet rage vanish.

After fumbling in the dark, some years later in May, 1995 – In what I call the “dark ages of autism” Taylor is diagnosed with autism.
2009

At 6’10, and nearly 21 years old, Taylor stands on stages around the world to share his strength and experience in living with autism. He shares his efforts to create our film, Normal People Scare Me, his attempts in self advocacy and job development, but more importantly, he shares pride in who he is, and who he has become: a young man with many facets – autism simply being “one of them” as he aptly puts it. He is quite a striking figure with his blonde gangly curls and quick smile, but moreover he is a philosopher of sorts.

After two decades of every sort of conventional therapy coupled with those I made up (out of my assets) using the arts to help him emerge from within his soft shell, Taylor speaks as if no barrier or challenge ever existed for him. And yet those challenges – the nuances of autism (the ones I live through everyday,) are ever-present in our world. In fact, I believe it’s fair to say that I see and experience more of the mysteries of autism in him than he does. Today at 20, I experience more of Taylor’s “ISM” than I did when he was 17 or 18.

People say “Oh my gosh Keri, I can’t see the autism.” And that’s the challenge of the “ISM.” It is ever-present, ever-maddening, and as ever-demanding in our house as it ever was, and time does not simply erase our fate. Despite the light, we experience the dark side of autism’s challenges that defy gravity. Taylor’s executive functioning and administrative skills are woefully lacking and that is simply how it is.

Last term, at 19, Taylor attended community college. He was brilliant in his film classes, participating and showing up everyday for class. He was excited to participate and be a part of college life. And yet he failed all five classes. There is no IEP to guide a young person in college. The homework was an impossible task for him to keep up with and so he flailed and flailed. He also tried his hand at semi-independent living as well. During a year away from home, he learned to hone his skills in cooking, shopping, and performing household tasks. And then through a series of events, there was a break-down in communication. Staff became verbally abusive toward him because they did not understand the nuances of autism and his inability to “comply.” Eventually Taylor moved back home where he now receives 16 hours a week of in-home supports to help him with job development, social skills, executive functioning, and independent living skills.

From these personal experiences, and learning about others in the same boat, I realize that as a society we are woefully ill-equipped to meet the train at the station. Our kids are aging out into adulthood with few resources to meet them at the station.

As I travel with my work and meet families all over the world, I see Taylor and I are not alone. Our story is hardly unique. And so I am on a fact finding mission to learn more about what is working and what is not working for families with kids transitioning to adulthood. My goal is to advocate all the way to Washington to redefine “how” we meet the challenges and needs of this vast population to become more inclusive, provide comprehensive services and supports, and meet the needs of this ever-growing population.

If you’d like to share your story with me, please tell me what is working and what is not working in your child/adult’s life, in your community, and in your efforts to help your child make the transition to adulthood.

AND SO WE DANCED…

This past weekend I attended a fundraiser with my son. I was shocked he wanted to go. Taylor usually prefers to stay holed up in his room, but lately, he wants to get out and be a part of the world which makes me very happy. He wants to make new friends but finds it extremely challenging. He is simply not sure how to go about it.

All dressed up in a tuxedo, and looking very sharp, I was proud to have him on my arm. When we arrived at the event, I asked him (okay, I begged him) to have a dance with me. He flatly and firmly said “no!”

I was disappointed, but I accepted his refusal. The evening was wonderful. I pranced around, danced, ate, and generally made the rounds meeting new people and sharing with old friends. Then, toward the end of the evening, came the band’s rendition of Louie Armstrong’s “What a Wonderful World.” This was our song at the camps I facilitated for five years in my community – a very poignant memory for me; and apparently Taylor too.

As the band continued “and I think to myself…” Taylor grabbed my hand and pulled me to the dance floor.” He smiled (down) at me – he is so darned tall – smiling at me. And he sang… “What a wonderful world.”

And so my son danced with me on his own terms. I held him so close not wanting the moment to ever fade for I am a proud mother like you…

“Yes I think to myself, what a wonderful world… Oh yea………….”